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A long time ago, I wrote a poem for my coworkers. I really had a lot of admiration for them, and they taught me a lot of life lessons. They worked hard, played hard, and made the most of every day. They were paralyzed veterans, and as much as I could, I tried to learn from the lessons they shared. Their strength amazed me, and they made me re-think one of my favorite pastimes – complaining. 😉

I think in a lot of ways, I met those men and women to prepare me for what life had in store. It isn’t always easy. It most certainly isn’t fair. But what you choose to do with the pieces you have left after your life explodes… well, that can make all the difference.

Today was supposed to be an “office” day for me. A day to tackle the mountains of paperwork I’m behind on. Instead, it turned into a day to go out into the world and see what it had to share. A lot of what I do is try to raise money for cancer research, and today I had the opportunity to get a check from one of our loyal supporters. That’s a really good thing!! But the reason they are supporters is because their daughter, Addison, died from brain cancer. That really sucks. I get to know them a little better each time we meet, and our conversations nearly always include laughter along with the tears. Today the check came with a hug, and I’m not sure if it felt better to be able to hug them as a thank you or to be hugged in return. Hugging is like that, I guess.

I also had a chance to go visit their daughter’s grave. They picked an amazing spot for her, and I could just feel the love there. Still… it just sucks to visit a child’s grave. I sat and talked with her for a minute about what her parents are doing so that other kids might not have to suffer the way she did. Addison was a fighter that defied the odds. I think she would be happy to know that her tumor got taken out, and hopefully what we learn from it will be used to fight some other child’s tumor.

As I visited with Addison, I listened to her wind chimes and the other sounds of nature there. I thought about how the world shows us poetry if we just stop to see it. Sometimes it is given to us in words, but many more times it is just the feeling you have inside. There aren’t always words to express the feelings we have. The love and the grief are just too big for words.

Addison’s parents let us us her as the “sponsor” for the first child to go on the upcoming clinical trial we are sponsoring, and because of their generous matching gift, we actually funded the first two kids onto the trial. That left me with coming up with a second sponsor person – someone that we can visualize as we fund the third spot on the trial for this unknown child.

And that’s when the day took a turn. You see, there are just so many families we know that have been touched by this disease. So I tried to narrow it down based on significant days to that family, and even that didn’t help! There was the anniversary of Ethan’s passing yesterday, Carter’s birthday today, and the anniversary of Jake’s passing today/tomorrow. (Yes, Jake is special and gets two days. More about that later. )

Most of these kids I never got to meet except through the broken-hearted words of their moms and dads. It’s the same for the adults with brain cancer. They leave behind shattered families who ache to have someone say their name. To know that they mattered and continue to matter.

We are funding this clinical trial to try and save lives, and for me, it is so special to connect the spots on the trial to these special brain cancer warriors. I hope it is special for their families, too.

We post about the progress pretty regularly on Facebook, so please join us there to see pictures of our sponsors and help us fund all 200 spots on the clinical trial. There are some really great stories to share with you as we go, and if you would like your loved one to be part of this movement, just let me know.

P.S. As for the rest of my day, I hope I got to spread a little sunshine into Carter’s family’s world, and I know that my brother and daughter spread a little into mine. I may have more to share on that later, too.

Hearing that your child has cancer sends your world into a tailspin. Hearing that they have a lethal form of brain cancer that really has no treatment path is devastating. It’s the kind of thing people carry with them for the rest of their lives.

One form of brain cancer, DIPG, has been had very few treatment advances in decades. A big part of the reason for this is that so little is known about how the cancer develops and grows. Typically, biopsies are not performed because of the tumor’s brainstem location, and what scientists do learn is often from tissue taken after a child has passed away. That is an issue, too, because it is a difficult conversation for most medical practitioners to have with these already vulnerable families.

We reached out to a very generous family who donated their daughter’s tissue to research, and they agreed to share their story. We hope that it will inspire others to think about whole brain tissue donation.

Interview with Kindra Adams, mom to Addison

When did you first start thinking about donating Addison’s tissue?

Addison’s father and I knew from diagnosis that one way or another Addison would be tumor free. We learned more about tumor donation after a Facebook page for Katherine The Brave posted about it.

Yes, Katherine the Brave’s page is well known in childhood cancer circles. Did you discuss the donation with people in your family and friends?

Yes, we discussed it with family and friends. Everyone seemed very supportive of our decision. We were going to do it no matter what, but it helps to have everyone on board.

Do you wish you had known more about tissue donation sooner?

Yes, it seems like information on donation is pretty hard to find unless you know about it already. If it wasn’t for Katherine’s page, I’m not sure we would have known anything about it. I’m also not sure we would have been real receptive to it if someone approached us. That’s what makes it more difficult to get the information out there.

What were your biggest concerns around donating her tissue? My biggest concern was that it wouldn’t grow. That after it was removed and transported, that would just be the end. I really wanted it to survive and hopefully help someone. I know it might sound unusual, but I was also worried about how it would affect her appearance. We wanted to be able to have an open casket, and it was nice to know that the incision wouldn’t be visible.

As a mom of a child who died from brain cancer, I totally get that. I don’t think it is an uncommon concern at all. Parents want to protect their child in every way, and this is no exception. Who answered your questions about the process? Dr. Monje . We had been in contact prior to this because I was looking for clinical trials for Addison. When I finally sent her the e-mail about donation, she set up a time and called me. She explained everything, and we stayed in contact. Even to this day, I can send her an e-mail and see how everything is going.

Dr. Monje’s lab contributes data to the open access data platform called Cavatica. Although Dr. Monje’s lab commits to putting 75% of the tumor tissue they receive into this platform, it is possible that Addison would have been part of the 25% that did not get shared. You were able to verify with Dr. Monje that Addison’s tissue was indeed shared, though, which is really cool.

Did you know much specifically about what her tissue might be used for? Yes and no. I know at the time of our phone call, Dr. Monje gave me lots of information. Unfortunately, my memory retention hasn’t been the best lately.

Yes, memory retention is frequently a problem during the grieving process. I definitely had some issues with that, too. How does in make you feel knowing her tissue is in the open access database, Cavatica? Honestly, I’m thrilled that Addison can be a part of something this important. We have learned that Addison is in the 20% of DIPG kids that are lacking a particular mutation so that makes her part in Cavatica even more important.

As a parent who also has a child with data in Cavatica, I can say that it does give you some comfort to know that their tumor tissue may help save another child’s life one day.

Cavatica is the platform for data sharing that will be used to empower an upcoming DIPG trial being launched by the Pacific Pediatric Neuro Oncology Consortium. You can read more about that here.

This post is written by my friend, Lori Hatfield Dickinson. Her words moved me, and I know several other people who could use them right now, so I asked her if I could share them with all of you.

As redbuds bloom and tulips turn their heads toward the sun, it’s bittersweet to think of the difference a year makes. It’s spring – literally and figuratively. After months of being quiet and reflecting, I feel a deep burden to write more honestly about my journey with God, grief and guilt.

Last year, fear was my constant companion. I saw spring as an ending. It was the end of a life I cherished with a man and family I dearly loved. There was no joy for us as the world bloomed because Michael was quickly fading.

Despite everything I said I believed at that time, I doubted God. I was mad. I was devastated. I made futile attempts to cut deals with Him, such as, “God, if you will just heal him, I will…” But mostly, I just felt abandoned.

Everything seemed like such a waste. A waste of a man with so much to give to the world – now unable to talk, to see, confused by simple instructions and confined to a chair. A waste of all the time investing in a marriage, a life, future plans that were not to be, all of which was compounded by the helplessness of watching my children lose their innocence without the ability to intercede. In March 2015, I wrote: “It’s as if we are standing on railroad tracks with a locomotive barreling toward us. I can’t stop it or move, so I’m constantly bracing for impact.”

It’s difficult to think anything good could come out having your heart being blown through your chest when you hold the lifeless body of the one you vowed to love and cherish the rest of your life. The primal cry from the depths of my heart when death came is something I will never forget.

In the ensuing days following the funeral I watched sunsets daily from Michael’s grave, sat in the darkness at night staring at his photo, read and re-read letters he wrote to me, smelled his clothes in the closet, and even at times, prayed the world would end. I was never alone, yet, I never felt more alone. Did I really believe there was a God and a Heaven? And if there was, where was He?

I began two “offline” journals. One, written directly to Michael. The first entry was the day he died.

June 15, 2015

You went to Heaven this morning.
I’m broken, lost, empty, alone.
I kissed you over and over.
I miss you.
For the first time since we met, you’re unreachable.
Our son is devastated. Grace is crushed.
I look toward where you’ve always been and the chair is empty.
I’m living my worst nightmare – I’m in a world you’re not in.

A little more than a week later I began a faith journal of sorts. It was a desperate attempt to work out whether God abandoned me or if I was the one who abandoned Him. I wrote to God…

June 26, 2015

When will you comfort me?
I am profoundly sad.
The truth is what I need most.
Give me understanding.
Strengthen me.
Be gracious to me.
Direct me.
Turn my heart.
Turn my eyes.

On June 30, 2015, I wrote and prayed this Psalms (31:10, 14-15):

I am dying from grief; my years are shortened by sadness. Misery has drained my strength; I am wasting from within. But I am trusting you, O Lord, saying You are my God! My future is in your hands!

I wanted to wholeheartedly believe. I just couldn’t.

Contrast that with my entry to Michael on the same date…

June is gone and so are you… I think I smiled more than I cried today when I talked about you.
I count the hours throughout the day – they go so slow. I like the days best where I sleep. I’m seeking God’s will. It’s my only hope for peace in all this. I wish I could be with you.

One day at a time sounds trite, but it’s true. God began opening doors before I even knew they were there. Through the journaling, sleepless nights, questions and tears – He slowly softened my heart. So many years I “served” God out of fear, obligation and pride. But, I didn’t truly know Him, love him, believe Him like I thought I did. It’s not always a priority to build a relationship with God when the world seems right. Now, I was desperate. And as a parent holds a heartbroken child – I started to feel God everywhere.

As I read my posts and journal entries I can see the progression I couldn’t see in the midst of the storm. I wrote only the following words on Sept. 1, 2015, from 19th century pastor Charles Spurgeon in my faith journal that resonates today…

“Don’t you know day dawns after night, showers displace drought and spring and summer follow winter? Then, have HOPE! Hope forever, for God will not fail you.”

God did not fail me, despite my disbelief.

He comforted me through Bible readings, books, church, people and prayer. He still does. He changed my heart and my priorities. I no longer view the world or problems the way I did before. A friend shared God was working faster in some areas in my life than others to make himself so obviously known I couldn’t deny Him. Maybe my heart was truly closed off that much.

In November, I wrote for the last time in Michael’s journal. The words captured what I’ve wrestled with and still do – the guilt associated with my disbelief, grief and survivor’s guilt:

Nov. 10, 2015

Passed our anniversary and approaching five months and the holidays. I don’t feel you around much anymore, but I’m hopeful you’re well.

I feel guilty for living and being able to love again. It doesn’t replace you, but I’m happy. That is a miracle… I’ve cleaned out the closet and I’m getting ready to remodel. I need the house to be different, the space to be new. I’m still sad when I think of you being so sick and the way you died. But, you have taught me how gracefully it can be done.

When I read back I remember all the feelings and emotions, but I also see how far I’ve come. While I may not feel you near, I do know God is, and my life is not finished.

I will never forget you. Your work here was finished, your legacy is big, and your memory will always live on in our lives through the love we now carry forward.

Goodnight Michael.

My pastor asked the question from a series titled, “When God Doesn’t Make Sense:” What if the scene of our greatest disappointment was the setting for our greatest moment? He used the illustration of Lazarus’s story – how with God, a waiting season is never a wasted season and God’s delays are not necessarily God’s denials.

Waiting is never wasted… It’s a paradigm shift for me. Waiting began on Sept. 27, 2013: Waiting on test results, waiting on radiation, waiting on chemotherapy, waiting on doctor appointments, waiting on planes, waiting on MRIs, and then, waiting on death. The time that passes after a terminal diagnosis is at a much different pace. Time passes quickly up to the point of death, then, it crawls – a day is a week, a week is a month and a month is a year.

However, waiting is not wasted when spring comes forth from winter. The trees roots are a little deeper and the world comes alive anew and refreshed.

It is difficult to bless and release the guilt of disbelief I carried in my heart for God through much of Michael’s illness; the guilt of being happy more than sad, seeing another spring… And yes, a measure of guilt for being in love with someone who knows my pain and walks the same path I do. That, in and of itself, could only be a gift from God.

But even as I wrestle with guilt and grief, I feel hope in the depths of my heart and soul.

Hope that God truly answered my prayer of healing for Michael in his perfect way and will.

Hope, that despite my actions, He didn’t or will never abandoned me.

And in surviving an experience I’d pictured to be unsurvivable – Hope that He isn’t finished with me yet.

What I wish I knew before my Mom was diagnosed with Glioblastoma Multiforme…

When brain cancer entered my life, I couldn’t have processed or understood at that moment that it was the cancer that keeps on stealing. It stole my Mom’s speech, her movement on the left side, her laugh, her smile, her personality, in short, it took all of her. And then, it came for us.

My brother, David, and I have been close my whole life. I’ve been blessed beyond measure in that respect. We endured much growing up; both of us faced major obstacles that required full family support to survive. It was always a comfort to know that my Mom, Dad and David would be there to face whatever challenge showed up next. I wish I knew how to prepare to for the day when crisis would result in the death of the leader of the pack. At thirty-six, it’s very difficult to think about how to face the rest of my life without my Mom.

My Mom’s fight with Glioblastoma Multiforme (GBM) was short. It began on Valentine’s Day of 2013 and ended on the afternoon of May 6, 2013. In those eighty-two days, she endured a resection, a stroke three days post resection, and three weeks of physical therapy which kept her from any sort of chemo or radiation. Mom’s left side was completely paralyzed thanks to the stroke, chemo, radiation, continued physical therapy and finally home hospice.

I wish I’d understood the health care system better. I wish I’d known that lack of funding, lack of research and no new treatment was the stark reality for those facing GBM. That death from GBM is the rule, not the exception. I wish I’d known GBM is considered “rare,” and that because it’s such a low priority, it’s considered an undesirable disease to study. I wish I’d known all of these things so I could’ve been prepared, planned ahead, advocated more effectively. But I didn’t.

I wish I knew before cancer that this… IS IT! Of course I know we only get one life; I wish I’d recognized earlier the importance of each day. I wish I’d taken more pictures throughout her life, that I’d spent more time with just her when she wasn’t sick. I wish a million things had been different, but I understand they simply are not. Mostly, I wish I knew how much the death of one family member can change the dynamic of the entire family. We aren’t the same. My Mom was the glue. She held everyone together, carried the Band-Aids and tissues in her purse for emergencies. No one tells you that cancer will change everything. Forever.

I wish I knew how just plain ugly cancer could be. There’s an unwritten rule among GBM folks: Do not compare any other cancer to this. When anyone does so, it is hard not to cringe. I’ve stood beside my dear friend while her Mom conquered ovarian cancer multiple times. GBM is nothing like that. My close friends, especially those who came to see my Mom, learned quickly this was a whole other beast. My Mom had the reasoning ability of a child post-stroke. She could say things that were cruel, such as when she told a friend that I pushed her out of her wheelchair and tried to kill her. Oh how that stung! Long gone was my sweet, smart Mama who loved others so very much. Nothing is quite as humbling as cleaning your Mom during a Depends change or feeding her soup and wiping her mouth.

I wish I knew how much others cared before cancer. People came out of the woodwork when they find out my Mom had GBM. They cooked, cleaned, prayed non-stop, gave gifts, and struggled for words that could possibly make my family feel better. My work family responded in a way you read about in books. They donated money in my Mom’s name to ABTA, covered my butt, and prayed non-stop. They took care of my cat, cleaned my apartment, gave me hugs, and listened when I needed to just spill my heart. My friends did all of this as well, but to see my work family just jump in without being asked told me quite clearly how they felt about me.

I wish I knew about post-cancer, post-funeral aftershock. I was ill-prepared for the after effects of cancer. I didn’t understand that my brain was processing all of these emotions for months after my Mom was gone. I continuously lost items, I forgot what I was doing, would find my keys in the freezer. I found myself continuing to panic with every incoming call and text, and sleep was hard to come by for months. Sometime around the five month mark, I started having nightmares. There are still days—over a year later— when I cannot remember what I’m doing or sleep through the night. While less frequent, the nightmares still love to resurface at the first sign of stress.

Lastly, I wish I’d known that all the things that fell apart did so for a reason. I’m not referring to my Mom’s death; her death is something I’ll never understand. It is only now that I begin to recognize that sometimes you have to experience extraordinary pain from loss before you decide to change priorities. My Mom was my biggest cheerleader; her cancer helped me see my life much clearer. She was constantly telling us good things would come from her cancer. I’ve made connections with others fighting GBM, begun working to spread smiles through my charitable project for kids with, Brain Cancer Share Your Shirts, and I’ve strived to make my loved ones my top priority everyday. The more I delve into advocating, the more of those “good things” begin to surface.

Brain cancer has not changed my core values or beliefs. However, some parts of my life have been permanently altered. If you ask me which issues are most important to me at the polls in 2014, you’ll find my answers dramatically shifted from those I would have given a year ago. My first priority is now supporting those politicians, regardless of party, who support brain cancer research. It matters. I wasn’t always a major supporter of brain cancer funding, but then again, I wasn’t always a thirty-six year old living without my Mom courtesy of GBM.

Missing Patricia A. Gauly today, and always.

With Love and Hope,

Kristen Gauly

Editor’s note: If you would like to learn more about what Kristen is doing in her mom’s memory, check out her Facebook page: https://www.facebook.com/pages/Brain-Cancer-Share-Your-Shirts/160672910806397

What I Wish I Knew Before My Son, Sam, was Diagnosed with a Brain Tumor….

My only child, my son, the light of my life, was diagnosed with a brain tumor in February, 2011 at the age of 19 and passed away 9 months later. What do I wish I had known before Sam was diagnosed? I wish I had known that once your child is diagnosed with a brain tumor, you are instantly and forever transported to a world of duality.

From the moment we heard the words “There is a mass in your brain”, we were thrust into an alternate reality, a different world that spun out of control, twisted on its axis, and irrevocably changed life as we knew it. Normal was gone. There is nothing normal about your child having a brain tumor, there is nothing normal about watching your child slowly die in front of your eyes and being helpless to stop it, and there is nothing normal about having to live every day without him! I’ve been thinking a lot about life now that I am coming up on the 3-year anniversary of Sam’s passing. I realize I now live my life in a constant state of what I have come to call “duality”, the unique ability to feel different emotions and to believe different realities simultaneously. It started with his diagnosis….

Hope and reality
Sam was diagnosed with Diffuse Intrinsic Pontine Glioma, “DIPG”, a particularly aggressive tumor with an extremely low survival rate. Less than 10% survive 2 years, and only 2% survive long term…an average survival time is 9 months! This is the reality we were faced with and lived with every minute of every day until he died.

At the same time there was hope…I thought if there is even one person who survives, then why could that not be Sam? In the face of such grim statistics, I had incredible hope that Sam would be one of the few to beat his tumor! No parent can accept the idea that his or her child is not going to survive…it is unfathomable to believe this will happen and so there is, by necessity, hope. I remember telling our friends at the cabin where we vacationed every July that chances were not good that Sam would be alive to come back the next year…..I knew the reality, I knew the statistics, and on some level I knew he would most likely not survive this tumor, but in the very deepest recesses of my heart I did not REALLY BELIEVE that my son would be gone! The dual worlds of hope and reality!

Child and adult
Sam was 19 when he was diagnosed. He was a teenager on the path to becoming an adult. He had graduated from high school, was attending classes at a community college, and was saving to move out on his own. He was not a child in the typical sense of the word and certainly not in the DIPG world, where the average age of diagnosis is 5-11. That being said, in some ways he was a child. First, regardless of age, he was MY child and would always be my child. Second, he was not fully an adult…he was still living at home, dependent on us financially, and had yet to establish a home of his own.

His first reaction when he heard the words “You have a mass” was to look to us, his parents, for help in understanding and dealing with this horrible thing. The look on his face was that of a child, a look that said “I don’t understand, I’m scared, HELP ME!” As he lost his ability to walk and to move his arms and then to eat and talk he was forced to become dependent on us to help him with the most basic of life functions just as a young child depends on his parents. And yet emotionally and mentally he was more adult than child….very mature for his age (as happens with a lot of cancer kids). He handled blow after blow from this tumor with a maturity I don’t think I could have shown. In some ways he was a child and in some ways an adult….the dual worlds of parenting a child and an adult.

Holding on and letting go
When Sam was first diagnosed I read about DIPG. I read how these children gradually lose every physical ability bit by bit until they are no longer able to walk, move on their own, eat, swallow, talk, all while remaining mentally aware of what is happening to them. I was stunned that this could happen to our children and there was nothing, I repeat NOTHING to do to stop it. I could not believe this was what was in store for Sam…how could my child, my sweet Sam have to endure this torture?? And so I hoped beyond reason that he would beat the odds and survive! However, that was not to be and his tumor did progress.

I love Sam with every fiber of my being. I could not begin to imagine life without his smile, his hugs, his gentle teasing, his ability to sense my every mood, his very presence. I hoped and prayed for a miracle, for something to stop this tumor and make him healthy again, until one day, one horrible, devastating hour I realized he was not going to get better, he was not going to be able to walk or talk or eat again and the only way for his suffering to end was for him to leave this body. And so while my heart was screaming “No, don’t leave me:”, I started praying, no begging, for God to stop his suffering even if it meant I would lose my son. How can one heart pray for two totally opposite things? Duality….holding on and letting go….the single hardest thing I have ever done!

Pain of loss and feeling love
At first there was just numbness. Then as the numbness started to wear off, I felt the excruciating, all-consuming, raw pain of having had my heart ripped out. Gradually there were times when the sharp pain receded, and instead the pain was more like an ache, intense and ever present, to be sure, but not as sharp or raw. That is where I am now. The pain, the ache is always there, but at times it reverts to the raw sharp all consuming pain. It takes my breath away and renders me incapable of doing anything other than getting through, trying to ride the wave until the tsunami subsides.

During the time between tsunamis when the pain is still there but more of an ache, I can enjoy conversations with friends, a beautiful sunset, the sight of eagles flying over our lake, the silly antics of my dog, the love of my husband and family. But during all of those wonderful things the pain is still there….it doesn’t ever totally recede. I still feel the pain in the midst of laughing and loving and appreciating nature, and sometimes the more I laugh and love the more I feel the pain.

Despite this constant pain I feel love and compassion more deeply. I love my husband, family, and friends more than I did before with a much deeper appreciation for their presence in my life. How does a heart feel so deeply this duality of intense pain and deep love at the same time?

Happiness and sadness
Before Sam was diagnosed with a brain tumor my emotions were simple. I was happy or sad, angry or pleased, content or not content. Emotions came and went, but they usually came one at a time. Now I see a picture of Sam I haven’t seen before and I am brought to tears and laughter at the same time….laughter for the joy of seeing a glimpse of him I had not seen and tears from the pain of knowing I can no longer see him in this world. I look at his drums and smile at the memories of him and his band practicing in our living room and the excitement he had when a practice session went well. At the same time I am in tears knowing I will never see that look of excitement again.

I remember lying next to him on his hospital bed holding his hand and keeping him company when he could no longer play video games or even watch TV to pass the time. It is exceedingly painful to remember what Sam endured in those last months, and yet with that pain there is a deep love and gratitude that fills my heart at having been blessed to be Sam’s Mom and share that sacred time with him. Multiple emotions now live in my heart …. It is rare to feel only one emotion at a time….Duality!

Living and not living
First let me clarify that by not living, I don’t mean dying. I’m referring more to the feeling of just existing and getting through the days until I am reunited with Sam. This is in contrast to living fully in the moment and appreciating that I am alive. This isn’t exactly a duality since it’s not really possible to do both at the same time (I don’t think) but I move in and out of the two frequently. Some days, especially when the tsunamis hit or it’s a particularly hard day, I consider it a success to have just gotten through the day and willing to try again the next day. It is okay, I believe, to have days where just existing is the best you can do. Those are the days where I drag myself out of bed feeling like I have a 100 pound weight attached after lying awake a good part of the night thinking of Sam and waiting for morning to come. But then morning comes and I can barely get out of bed (there is that 100 pound weight after all), and it is all I can do to get dressed and sit in front of my laptop, eat a little, and wait for it to be time to go to bed and sleep and hope to dream about Sam.

Then there are days when I am motivated and feel alive. Some days I just feel more at peace and more secure in the knowledge that Sam is still here with me, and I truly believe that by enjoying life and the people in my life Sam is also enjoying these things. I know I need to truly live life, not just exist, in order to honor Sam. On those days I feel good knowing I am living life “for two”. I know he understands my difficult days, but I also know he is happier when I am enjoying life. How do I know this? The same way I knew when he was having a bad day or was upset when he was here physically…a mom just knows! Living and not living…. I am trying to fully live but giving myself permission to have days when just existing is the best I can do.

Physical and spiritual world
There is no question that Sam is no longer here in the physical sense. It will be 3 years on November 14th since I last held my son, saw his sweet face, held his hand, and looked into his beautiful brown eyes. He is still the first thing on my mind when I wake up and the last thing on my mind before I fall asleep. I miss him immensely with every breath I take. Before Sam died, I didn’t often think about what happens to our soul or spirit when we die. I had a vague sense that yes, there was an afterlife but really gave it very little thought. Since his death, it has become an extremely important concept to me. I have spent a lot of time thinking and reading and praying about what happens when we die. I am convinced that life continues to exist despite the loss of our physical body. I truly believe that Sam is still alive. I believe that the death of our physical body is our birth into a new and different realm where we will be reunited with our loved ones. I believe this not because of what I’ve read or what others say but because I continue to feel Sam’s love, and I continue to feel his presence when I most need it: a sign here or there when I am feeling lost and need to be reminded he is still here or a sign when things are going well and he’s letting me know he’s happy. I am coming to realize that I will always be living in these two worlds: the physical one where Sam is no longer and the spiritual one where Sam is alive and healthy and happy. On a good day when the two worlds combine, I can feel his presence and his love and that is when I feel a little peace. The physical and the spiritual….I strive to be able to merge the two!

What I wish I knew before my friends’ son got brain cancer… This may seem a strange twist on the theme of these blog posts but I wish I knew my friends before their son got brain cancer. When I met them, their son had been in remission for a couple of years, but the pain over what they experienced was still raw. As I got to know the couple, she spoke of the experience of facing cancer with a child and the disappointment in the friends who disappeared during this difficult time. So in addition to the fears and grief that come with a child facing cancer, she spoke of the loneliness and the struggles as a family. She talked of how people they believed would stick by their sides did not, and that some people they didn’t expect to help, did.

Her words really resonated with me, as did her talk of the pain of watching a child go through cancer treatment. Hearing their struggles made me wish that I had known them and had been able to be there for them during their journey because I knew I would have been one of the ones who stayed around to help. I thought of ways I would’ve helped to lighten the load on them, how I would have been there to listen, to help with meals, their house and anything else they couldn’t quite find the time to do. Years later, I met a family with a child with a new cancer diagnosis, and my friend’s words about the loneliness of pediatric cancer rang in my ears.

I decided to make an effort to help them through fundraising and emotional support. Looking back , in some ways I realize I did it to make up for not knowing my friends before their child got cancer. As this family’s child reached the end of treatment, I realized there just might be a real need for support of other families facing pediatric cancer. I surveyed families and found there certainly was a need. I brainstormed how best to provide this support, and it evolved into what is now a nonprofit based in Fredericksburg, VA that focuses on the needs of the parents rather than the child. We provide meals, house cleaning, lawn care, hair cuts, gas cards, a financial relief fund and emotional support to the parents in order to relieve some of their stress and to provide them with more time to focus on their family. I wasn’t able to support those friends during such a difficult time because I didn’t know them, but now my organization provides support to families in parts of VA and MD with similar struggles. We fill the void of the friends who, for whatever reason, are unable to help and for the friends they have yet to meet who will wish they had been there in such a difficult time.

What I wish I knew before my mom got brain cancer… the value and limits of time.

For me, Friday, September 12 was like any other day in the life of a presidential campaign staffer. Working from dawn to dusk, doing everything and anything to push the ball just a touch forward in the task of getting John McCain elected as the next President of the United States. I lived and worked in Tallahassee, FL and was the Deputy Southeast Regional Campaign Manager for McCain for President.

That night, a few campaign staffers and I headed up to Marietta, GA for a GOP Unity Rally on behalf of Senator Saxby Chambliss and the Georgia Republican Party. Nearly a thousand Republican volunteers from throughout the state would be congregating, and it was a perfect time to sign up volunteers, recruit people for coalitions, and generally show the flag on behalf of Senator McCain. I had arranged for the Senator to call in to the rally and express his thanks for their support.

The night before I had talked with my mom, and I got the impression she wasn’t feeling well. During the day on Saturday, I talked with her and again got the distinct impression that something just wasn’t right. She insisted that I call her when I got back to Tallahassee that evening and that I shouldn’t worry.

The event was a success, and we were all excited about having gotten so many people signed up and engaged in the campaign. In the months before, the Obama campaign had placed staff in Georgia and tried hard to make Georgia competitive. With nothing but volunteers and me and my teams’ efforts from Tallahassee, we organized the state, built coalitions, and flexed our muscle via earned media events and scared the Obama staffers out of Georgia and into North Carolina.

I dropped everyone off at their respective homes and was entering the code to get into my apartment complex while I was on the phone with my mom. The sun was setting on what had, for me, largely been a great day. Up until that point, Saturday, September 13 had been a very successful day, and I was excited about the future. For my mom, it would be an entirely different story.

As I spoke to her, mom seemed so calm as she described to me the events of the night before and then, with what seemed to come out of nowhere, she said, “They found a mass in my head.” I believe my initial response was pure disbelief, and when she confirmed for me what she had just said, I immediately started to have a panic attack. I had to hang up the phone because I just needed to scream as loud as I could, something that I had honestly never done and have never done since.

I called back and spoke with my cousin who walked me through the events of the following day, which lead to this grim discovery. On Friday, my mom had noticed that her tongue felt thick. She called her various doctors and sadly, none of them returned her calls. She called my aunt and they decided to go to the emergency room.

Initially, my mom was told that it was likely an allergic reaction to something and she was given a prescription for an EpiPen. While getting the prescription filled at the store, mom had a full seizure and back to the emergency room she and my aunt went. It is then that they performed the CT scan and found the mass.

I wanted to drive back to Savannah right away, but between crying and already being tired, I couldn’t see clearly to do that. I went back to my apartment and began to research everything and anything as it related to brain tumors. Everything I read made me even more upset. Eventually, I went to sleep as I was crying so much I could barely see the computer screen, let alone make sense of anything I was trying to read.

The mass was large, and it had tentacles forming something like a dumbbell in my mom’s brain. The CT and MRI had suggested a Glioblastoma Multiforme Brain Tumor (GBM). A GBM is one of those diagnosis that, by and large, has had very limited hope for a long time. Innovations in treating, let alone curing, GBM have not been forthcoming. Having been so involved in politics, I knew that Senator Ted Kennedy had been recently diagnosed with the same tumor and had successful surgery to remove the tumor. I went to work researching where he went to have that done.

My mother seemed so calm as we sat in the hospital room the night before her biopsy. She wasn’t crying and showed no sign of even being nervous about what might lie in front of us. I on the other hand was a mess. I tried to keep a brave face, but I couldn’t. I was scared, sad, angry, and just about every other emotion you can imagine.

We scrambled to get all the necessary forms completed in advance of the biopsy because I was informed that if the tumor were operable; they’d likely go ahead and remove it at the same time. Worried about what condition my mom would be in afterwards, I didn’t want to leave anything to chance.

It was random chance that my aunt and I were walking down the hall when the surgeon came out of the operating room. He informed us that the tumor was inoperable and that it very much looked like a GBM, but would need the path report to confirm that diagnosis. Based on what he saw, he said he thought my mom had less than 3 months to live. We were dumbstruck and heartbroken. Even writing this now, I can feel that helpless feeling that I felt that day in the hospital. With everything in my being, I felt that those words just couldn’t be true.

In researching Senator Kennedy’s experience with a GBM, I saw that he went to Duke. He had surgery, was getting treatment, and doing relatively well, all things considered. I called Duke, got all the information to get a second opinion, and camped out in front of the path lab waiting on the slides so I could send the package to away in hopes my mom would be accepted as a patient.

There was no way that I could or would accept that my mom had less than 3 months to live, thus I went on a one man campaign to ensure that she got into to see the same surgeon that worked on Senator Kennedy’s tumor. My goal was to give my mom the best chance that there was to ensure she would survive this diagnosis and disease.

My mom’s 3-month diagnosis turned into an incredible 18-month experience. Through all the ups and downs over those 18 months, you might be surprised to know that, aside from the initial conversation about her possible death just before the biopsy, my mom and I only talked about her death one more time.

—

In February of 2010, mom and I made our final trip to Duke. It was on this trip that we had the final conversation about her possible death and she laid out for me her thoughts, as best she could, on the experience that she had gone through in fighting this tumor.

The doctors informed us that the tumor had started to grow again and that we were running out of options and were likely at the end of the line. Most people at this point would assume that we would have had Hospice assistance, but we didn’t. Even after returning home, we still did not have Hospice.

On the return home, mom shared with me that she had few regrets in life. She would do a few things differently, but all in all, she was pleased with how her life had turned out. She wasn’t angry that she had this tumor, nor was she angry that God was cutting her life short. She felt that it had all happened for a reason and that she was confident that God would use this experience she was going through for something better. She had a few people that she wanted to talk with before her journey was over and, if possible, wanted to make a trip to Hawaii. Her strength and bravery was just amazing. I was in awe.

On the other hand, I was a mess. I spent every moment of my time not spent working or taking care of mom, researching other treatment options, calling medical centers, and sending medical records to get another opinion. Sometimes those calls were so hard that I had to call back because I couldn’t control my crying. I was not prepared at all to lose my mom. I was not ready.

On February 28, my mom fell down and hit her head. She seemed fine and the doctor from Duke spoke with us and suggested that unless she seemed to be in pain that we wait and take her to her primary doctor in the morning. Mom seemed fine the rest of the day and evening, however the next morning she began to go downhill.

That Monday, I still thought we had more time! I spent the morning with her and then ran errands in the afternoon to go ahead and purchase the cemetery plot, send off yet for another 2nd opinion, and then have a conversation with my mom’s nurse at Duke about a possible hospital to hospital transfer. The nurse from Duke was the one who actually told me that we were at the end, and that there weren’t other options or opinions and that what my mom needed now more than ever was to be given permission to die. To acknowledge how hard she fought, but to let her know that it was okay for her to let go.

I returned to the hospital, and together with my family and a couple of my mom’s best friends, we sat there with her. By this time she was in a coma. I asked everyone not to cry or be sad while we were with her. We talked about my mom’s favorite flowers and a tear shed from her eye. The nurse at the hospital told me that this could last just tonight or could go on for some time, but almost as quick as she said that it seemed to come to an end. I told my mom how much I loved her, and how proud I was of her fight. I assured her that she would be going from my arms to the waiting arms of her mother and father, and that all would be okay.

Without notice, mom woke up and looked right at me. She turned her head to look at her sisters and friends and then took her last breath. Her death was both peaceful and beautiful.

When it was over, then I cried. I cried out how much I wish I had done more. I cried at how sorry I was that I hadn’t done more. I cried because while she was at peace with what she had been through, I was not, nor was I even ready. I felt like I needed more time.

—-

Since my mom’s death, I have gotten involved with the National Brain Tumor Society as the Lead Advocate for Georgia. Additionally, I am a brain tumor caregiver mentor with Immerman Angels. I want to use the experience I went through and the lessons learned to help others going through a similar situation and try my best for the experience my mom went through to be used to help benefit others.

It should be noted that when I read Senator Kennedy’s book, True Compass, he referenced his own desire to share his experience with GBM so that he could offer hope to those who faced a similar diagnosis. Knowing Senator Kennedy’s experience showed me the path to hope for my mom, and for that I am grateful.

Our daughter, Megan, had suffered from headaches for years which doctors said were migraines. However, on December 1, 2004, an MRI revealed our worst nightmare. We got the news no parent wants to hear – “your daughter has a brain tumor.” Our lives would be changed forever that day.

A biopsy revealed a grade two Oligoastrocytoma. After three surgeries and years of chemo, fast-forward to August 2009, her tumor had now progressed to a grade four Glioblastoma. This time treatment would be radiation and more chemo. Fast-forward to February 2012, more words no parent wants to hear – “Megan’s tumor is growing, and we have run out of options. “ Basically, nothing more we can do for your daughter, and then I asked the dreaded question – how much time does she have, and the dreaded answer – six months. So we took that special trip, had fun with family and friends, ate good food and we didn’t focus on what was going to happen tomorrow.

On August 10, 2012, Megan passed away from this terrible disease. It was a long journey of so many ups and downs that Megan handled with such grace and dignity – never complaining. She had a beautiful spirit that shined through in how to live day-by-day with the challenges of a terminal illness.

Six months after Megan’s death, I found the following paper she wrote for an English class at Old Dominion University. The paper was a hidden gift to us, as Megan was very private about her illness. It gives such an insight as to what life is like with a brain tumor. Megan just wanted to live a normal life like any young adult.

“English 101 Megan Jarvis March 6, 2008

I believe that life is something that should never be taken for granted. In my first year at college I have met many people who do this every single day, not thinking anything will happen to them; that they are untouchable. I, like any young healthy person, thought that I would be fine forever, but realized that disease does not discriminate. It can affect anyone at any time, no matter how perfect they think their life is.

When I was sixteen years old I found out I had a brain tumor. I had three major surgeries, each setting me back physically and mentally. I had to deal with pain, speech therapy, seizures, chemotherapy and radiation. It has been hard, but it has helped me understand how precious every little thing in one’s life is. Since the surgeries it has been hard for me to remember my friend’s name, drink a cup of coffee, drive a car, swim, or play my piano. It is even more difficult to take a piece of paper and write my thoughts into words. Another thing that is different is all of the medication I am on. Before this I never took any medicine, and now I can’t go a day without it. It is a lot to remember and also come many side effects. The worst is when I become toxic, which has happened many times. This hurts me the most by having to miss important things, like school. I had to be home-schooled part of my senior year. I have lost almost all of my short-term memory and have trouble finding words. This can be very frustrating.

With things being the way they are, it is distressing for me to see people act in ways that are so perilous and think nothing of it. They won’t wear their seatbelt in their car; they don’t need it. They start smoking cigarettes; it makes them look cool. Lying out in the sun all day is smart and makes them look better. And after all of these things, they believe they are so healthy that they have no need for medical insurance. Then they start with their complaints – I’m not getting paid enough, I don’t like my car, I’m not tall enough, my clothes aren’t pretty enough. I want to tell them to stop wasting their time complaining about these petty things that don’t mean anything. Start appreciating things that do matter. Volunteering in a hospital I have met many elderly people with terminal diseases. When talking to them, almost all say that their sickness is due to decisions they made when they were young.

I met a person at school and when I told him about my situation, he was surprised at the way I was living my life. He said with something like this I needed to carpe diem, or “seize the day”. That was the motto by which he lived. And I did agree with him. Eat, drink, and be merry is something everyone should do; live a happy life. But don’t lose concern for the future. I told him my saying is memento mori, “remember that you are mortal”. Life is something that’s value should not be underestimated.

I know what I have experienced is more than significant. It has completely changed my life. Everything now is opposite of what I had planned it to be. It did have some good with it though. I was able to meet so many great people, people who have gone through much more than me. It showed me that I have more friends than I ever thought I did. It showed me how kind people are, but unfortunately how unkind others can be.

I am strong inside, not fearful of my future. I don’t look ahead, just the present. I don’t even know what I am doing tomorrow. I was never scared of what was going to happen to me, and I was the one holding up my family through the ordeal. I don’t know what I want for the immediate future. I think my goal is to just get through another day and see what happens from there.

My life is nowhere close to where it was before any of this happened, but I wouldn’t change anything.”

Megan had wisdom beyond her years like so many children and young adults who have to deal with cancer. Their lives remind us that it’s not the number of years we are given, but how we use them.

The question of what I wish I knew before Megan was diagnosed. I wish this were all a bad dream! I wish I wasn’t in the grieving parent club that I didn’t ask to join. Someone I knew who had also passed away from a brain tumor last words still stay etched in my mind. Confront reality, confront the end.

I thought I knew what life would be like after Megan was gone. I thought I would be prepared. But no one can be prepared for death, let alone the death of their own child. I knew how this story would end. After all, you don’t read of too many people living a long, full-life with a GBM. Sometimes statistics don’t lie. But that’s not to say we ever gave up hope. I grieved for many years being her mother and primary caregiver and watching her go through so much pain and suffering. That grief journey is over and now I’m on a new journey. Learning to live with the loneliness and emptiness. Learning to live with the reality that my hopes, dreams and future for Megan – gone. All the thoughts of what could have been, should have been, would have been – gone. From the time Megan was little, she always wanted to be a doctor – ironically, a Neurosurgeon.

So for my future – I will strive to live my life with Megan’s positive attitude, courage, perseverance, compassion, faith and living for today like there may be no tomorrow on this earth. I do believe there is hope that each day can get better – it’s a minute-by-minute process that may take me a lifetime to achieve.

Megan, may the wind be always at your back, and may the sun shine warm upon your face. And until we meet again, may God hold you in the palm of his hand.

I’ve always been the kind of person that likes to stay busy, have a hand in everything. I like to do as much at our kid’s school as possible, be involved with our parish, help in our community. I had no idea how much we would need all those people. I had no idea that they would rally around us before we even knew we needed it. I’m thinking back to those first days, weeks, months of Adele’s diagnosis and treatment. If someone had asked what we needed instead of just stepping up and doing it, I don’t think I would have known what to say. If I did have an idea, I would have been too proud to voice it. I do now know what we needed and were blessed with, and I hope it helps other friends and families who want to know how to help.

Let’s start with just how debilitating it can be to have a sick kid; a “really sick, possibly won’t make” it kid. It was literally all I could do to roll out of bed. I probably functioned on about 50% of my brain during the worst times, the chemo, waiting on those crucial MRI’s. Nothing extra was happening, lots of McDonald’s was consumed, and we limped along. The worry was physically and mentally exhausting. I had no idea how much worry could knock a person down. Thankfully, I had given up all of my volunteer duties and part time work as soon as Adele got sick. I gave myself permission to focus solely on her and our family being together. Our world narrowed in a big way to the most critical, most important things and everything else had to go, at least for a while.

The best thing anyone did, and continue to do, is pray for Adele. I’ll never forget someone’s message “when you are too tired to pray, I’m praying.” That was, and still is, incredibly comforting. I did have times where there was nothing left, and I was so thankful for the folks out there praying for Adele. To this day, prayer holds us up. We’ve received several relics and medals that we keep near Adele (she has relics of St. Benedict, Gianna and Gerard under her crib sheet). She also has a miraculous medal under there. You can’t really put a chain around a toddler’s neck so sleeping with them (safely) was the next best thing.

Food was probably second best on the list of things folks did. Our kids would have eaten chicken nuggets every night if it wasn’t for our amazing parish, friends, and even strangers. Even better, everyone brought tons of food, so even though we only got a few meals each week, there was plenty of food. Don’t give someone your dishes, please use a foil pan that they can throw away. The last thing they need is to worry about returning your Pyrex. Some of my favorite meals were the snacky ones where we could just grab bits here and there. Also awesome was the meal that could be eaten or frozen. Sometimes we were either out of town or needed to eat other food first. The ability to freeze a meal and pull it out later was wonderful.

Another huge blessing was a family that single handedly took over our lawn care. Honestly, we probably never would have remembered to mow. Even if we did remember, we were tired or gone or just wanted to be together as a family. This goes for the other every day tasks of life too. Go fold laundry or pool cash together with friends and send someone to clean house. We were blessed with a couple different friends who gifted us housecleaning, and it was amazing. The sheets never would have gotten changed otherwise. When you spend an hour or two on someone’s every day work, you are gifting them an hour or two. That time is so precious.

Don’t ask to mow, just show up and do it. I always felt guilty saying yes to help, and I was so busy during hospital stays that I couldn’t keep up with texts, calls and emails. When I did have a minute, there was no cell service or I just didn’t have the energy. Just drop off a meal, or just take a Coke to the hospital. And then go home. I know that sounds mean, but it takes a lot of extra energy to entertain a visitor. Like I said, this is my experience, everyone is different. There were a few, very low maintenance visitors that were very helpful and without them Peter and I would have lost our minds.

Please don’t stop emailing or texting; just don’t expect a response. We had a very busy, social life before cancer struck, and I felt very isolated at times. Even if I didn’t reply, I loved reading the emails and messages. It meant a lot that folks were thinking about and praying for us. A lot of times the message was exactly what we needed right then too, like the friend praying when we were too tired. I know you don’t know what to say, just “Hi, I’m praying” is good.

Our parish, friends and family raised cash for us and created a non-profit fund for Adele at a local bank. This was a huge Godsend that we didn’t even realize would need and continue to need. Medical costs of course are huge, and then all the extras like travel costs, extra eating out when you don’t have the energy to plan a meal, things you didn’t realize you would need (like the time our one week hospital stay turned into 3 weeks.) We have been so blessed with financial support, and it made a huge, huge difference in our stress level. Not having to worry about missing bills or not having gas money was and is a major blessing. It’s also so good for our hearts and souls to see all the folks pouring out their love to Adele in such a tangible way.

We had a core of consistent hospital visitors that kept us fed and sane, and they rank right up there in the top three best things folks did for us. The guys brought food that didn’t come from the cafeteria; they were helpful, and they didn’t care if we hadn’t showered for four days. They would even hold Adele (who was sometimes screaming because she felt like crap and just wanted Mommy or Daddy.) They didn’t require anything from us, and they filled our tanks so we could make it another day. Being in the hospital is rough, being there and watching your child suffer is almost unbearable.

My husband reminded me how much our friends and family stepped up to help with our three big kids while Adele was in the hospital. There is no way we would have stayed sane, and Peter could have kept working without all the help. Peter’s work has been amazing as well, God is definitely guiding us.

We, well, mostly Adele, got “stuff” as well, along the way. Some of it was very needed, like the Basket of Hope we got after brain surgery in St. Louis. She was feeling better, getting bored, and that came at the perfect time. Others mentioned items like quarters for laundry and vending machines, stamps and stationary, actual mail (this was especially nice for our big kids, several thoughtful folks sent them letters and items.) Someone else to send thank you notes on behalf of the recipient – I could not keep up with thank you notes. We were literally in the hospital for almost 6 months with little breaks in between.

There were also sibling packs from the hospital and other folks that helped our big kids not feel so left out. This really depends on the age of the siblings though, it might not be so helpful for smaller kids. We did get a little overwhelmed with toys and blankies at one point, so temper your toy shopping. I will say that twice we got two big grab bags, those were the best. It was lots of random stuff, mostly one time use and/or disposable, for mommy, daddy and Adele. It was a great distraction and time filler and it was great stuff like gum, little snacks, bottled water and bubbles. All excellent items that we wouldn’t have to pack up when we eventually went home.

Speaking of going home, kids on chemo are must more susceptible to germs so things like Clorox wipes and Purell are always nice. That housecleaning comes in nice here too. You don’t realize the level of clean you have to obtain until your kids immune system is completely wiped out and a germ normal folks encounter every day could send them right back to the hospital.

In summary, prayer is number one. Pray, pray, pray. Just knowing people cared about us and didn’t forget us was so important. And then just the regular every day stuff we all do with barely a thought like eating and home maintenance. Time is a huge blessing, anything you can do to give a family more time together is huge. And it probably doesn’t even cost you any money. Stuff is just extra, little stuff that won’t create more work (i.e. finding a place to put or pack it).

Thank you Jesus for all the folks you sent our way, for all the folks you continue to send our way. You’ve blessed us abundantly. Please bless others in need the same way. Please grant Adele complete healing from cancer and many, many, many years with us on Earth. Jesus, we trust in you.

If you have been paying close attention, you know that we have missed a couple of weeks in the 52 Blog series. From January through June, I posted one story a week, usually on Sunday. If I’m being honest, getting those stories published on time was probably the only thing I was doing with great regularity.

This past month, I have been VERY busy. The “day” job has been busy, and Dragon Master Foundation has also been demanding a lot of my time. I haven’t been pestering my writers like I had been, and there have also been some personal issues with a few of the writers that have kept them from participating. It seemed that it all came to a head in July and the blog has suffered.

But you know what? It’s just a blog. The point is to share stories that will help others down this path and to raise awareness among those who we hope will never travel this way. It’s important, but it is secondary to the real world. The real world demands our time and energy, and rightly so. I hope that you will stick with us through this rough patch, and I believe that we have some wonderful stories yet to share with you this year.

In the meanwhile, I wanted to share Danny’s story with you guys. Danny is a brain cancer warrior who is having a birthday on July 25th. You may have seen his story on the news or on Facebook. He has DIPG, which is a particularly nasty brain cancer. Making his day a little brighter will make your soul smile. In case you missed it, here is his address:

Danny Nickerson
PO Box 212
Foxboro, MA 02035

If you mail a card tomorrow, it would still make it there in time for his birthday.